The Story Your Body Tells

My sweet Jaycee,

I'm not sure how much you remember about all of your medical experiences, since you aren't able to tell me. But you can find reminders all over your body.

Your eyes-They are bright and beautiful. When you look closely, you might be able to see the fine scar in the corners of your eyes from your two strabismus surgeries. These scars will go unnoticed by most people, but I see them because I was there when it happened. I remember the short surgery, your recovery, and putting in the drops afterwards. You looked so cute leaving the hospital in your sunglasses after the surgeries. Because of this surgery, your eyes are able to stay straight and don't turn in now.

Your chest- You might notice a scar that looks like an exclamation point. If you look closely, will see that there are actually two of these nearly right on top of each other. These scars are from your open heart surgeries. You were so tiny at 3 months old when you had your first heart surgery to fix the hole in the center of your heart. You were so little and not everything could be fixed perfectly that first time, so you had another surgery when you were 2. It was so hard to see your new scar but I knew it was necessary. Your heart had to be fixed so that you could live and have a better life.

Your neck- There are three noticeable scars on the right side of your neck. Two years ago when you were really sick in the ICU, you had to have a central line in your neck to help monitor your vitals and get medications into your body while you were on the ventilator. You were so sick with septic shock, acute respiratory distress syndrome, pneumonia, and rhinovirus. We weren't sure if you were going to make it through the illness, but you did. Sometimes, people ask me about the scars on your neck. I get to tell them how you were in a fight for your life and you won.

Your wrist- Right now, you might notice the red tiny marks on your wrist that will surely leave a scar. Just a couple of months ago, there was an arterial line stitched into your wrist so the doctors could monitor your blood pressure. You were very sick. You were on the ventilator, had pneumonia and rhinovirus, and were in respiratory failure. Your body was having trouble regulating everything because you were so sick. Being able to monitor your blood pressure accurately was essential when it was dropping so low. These tiny marks show off another victory you had in a health battle.

So Jaycee, the marks on your body are reminders for you. I don't want you to be sad when you see these reminders on your body. Instead, I want you to be proud and thankful. You have overcame so much. You have had to fight for your life. You have endured things that most people will never have too, yet there is a smile on your face. Your story is amazing and is worth telling!

Love-
Mom

 

What Jaycee's Professionals Did Right

Over the years, a variety of teachers, therapists, and support staff have played a large part in Jaycee's life. She began therapy in early intervention when she was 2 months old. After early intervention, it was pre-school and later/currently elementary school. Besides summer breaks and illness related pauses, Jaycee has been heavily involved in school or therapy all her life. Jaycee has had roughly 9 years in programs. I have had 9 years experiencing life as a mom of a child in therapy, which is much different from my usual professional role as a speech-language pathologist.

I have written other articles offering tips to professionals based upon my experiences with Jaycee. That was mainly negative experience based. So, I'd like to offer the flip side of it. There are things that some of Jaycee's professionals have done right over the years.

Open Communication:
Jaycee can't tell me about her day. She can't answer questions or let me know if something happened. She can't tell me if she had therapy today and how it went. So, that is why I have truly appreciated those professionals who have been her voice to me. Some have sent me text picture messages or emails of something cute or funny that involves Jaycee. I have loved communication notebooks that have allowed information to pass between the teacher and I without feeling like I'm bothering someone or forcing someone to report to me. A therapist who sees me in the hall and actually talks to me for a minute or two about what is going on has been great too! Open communication may seem like a no-brainer but trust me, it isn't! 

Acts of Care:
When a professional goes out of their way to show they really care about Jaycee, it is an amazing feeling. The professional who gets her a Christmas gift or a get well soon gift shows that Jaycee isn't just a student to them. The professional that asks me how Jaycee is when she's sick or who checks on her when she's had an appointment shows me that Jaycee matters to their life. The teacher who had classmates make Jaycee get well cards showed me she was an important part of the class. It's great to know people care.

Demonstrates Patience & Respect:
I know Jaycee can be a challenge. I know there are some days that are just plain hard. So, I really appreciate those who can get over the hard days quickly and move on. I like when people can talk about Jaycee's problems and issues by describing the problem without anger or attitude. I like when people don't call her stubborn and some other negative adjective when she acts up. I know Jaycee isn't always easy but I love the professionals who can deal with the behaviors with patience.

Sees Jaycee as A Whole Child:
Jaycee isn't just a child with Down syndrome and educational needs. She has many medical diagnoses, which affect her everyday. Her medical issues have to be factored into her school life. I appreciate when professionals understand Jaycee can't be outside because of an extreme temperature and make accommodations for her to keep her lungs safe. I also appreciate when the professionals don't make me feel bad when Jaycee misses school or appointments due to her health needs. She's sick often. I can't help it. She can't help it. When she's sick, school takes a back seat, and that is just the way her life is.

Seeks My Input:
I have loved it when professionals have included me in conversations about possible goals for her educational plan. A few therapists always call me or email me before Jaycee's annual meeting to check in with me and to talk about the plan for next year. I like feeling that I'm an important part of the process since I am a big part of her life. I love feeling like my opinions matter in the big and small things. After all, in a few years, they will be with different students and I will still be with Jaycee.

Understands Jaycee is Part of a Family:
This may sound like an unimportant point, but hear me out. It's easy to tell someone to do a therapeutic activity or school homework but sometimes it just nearly impossible. It is really important for teachers to understand our family routine and Jaycee's medical requirements. For us, we get home by 4 pm. That gives us 4 hours to eat dinner, do 50 minutes of treatments, bathe, and relax a little before Jaycee heads off to bed. But, Jaycee isn't the only person in our home. Jaycee's brother has needs too. I have often have paper work from my job to do at night. If my husband works overtime, I'm juggling all of this on my own. So sometimes, there is nothing that important from therapy or school for me to feel like conquering when the family is all home at night.


I'm so thankful for all the teachers and therapists in Jaycee's life that have shown me that Jaycee can be well cared for by someone other than myself.

Looking Through the Right Lens

Remember these glasses from the movie National Treasure? Really, I didn't like that movie but I have seen it more than once because of my husband. In it, Nicholas Cage uses these glasses to read a secret message to find clues to the treasure. Later he discovers that by switching the red and blue lens more of the message is revealed helping him find his way to the gold and gems.

These glasses remind me of how I view my own life and circumstances. If I look through the clear lens and see my reality, it gives me only one perspective. But by adjusting the lens, I can see more and more.

Here's an example. When we got home from the hospital last month, I was immediately in my post-hospital funk. That was Jaycee's 21st hospital admission for an illness or emergency. (That doesn't count surgeries or admissions for tests.)  After 3 weeks of being away from home, I was exhausted and stressed from her hospital stay.

When I'm in the hospital, I'm just reacting to circumstances and trying to make it through the day. When I get home, I start to really fully process everything that has happened. I think about the tubes, the bad news talks from the doctors, and the scares Jaycee just survived. There's sadness that this happened again. There is also a sad reality that this probably won't be the last time she's ever in the hospital. It's never easy even after 21 times, though it does get more familiar.

I was in a teetering position when I got home from the hospital...feeling so isolated, feeling like no one has our problems, feeling on the verge of depression. But there was also a feeling of gratefulness that she had survived again, and I still had my little girl. I wasn't sure how to resume life again after another trauma in the ICU.

The reality of the first look through my glasses said...life wasn't good. I don't have much to be happy about.

But, then I did a smart thing. The first time I went back to church after her hospital stay, I asked someone to pray for me, because I didn't want to stay looking at my situation through this lens.

So I did. I didn't feel any differently when I walked away from the altar, but I did get some good encouragement from that prayer partner. The next day, the lens changed though. I was able to see things through a different perspective.

I didn't feel sorry for myself anymore. I didn't have the urge to hang on to depression and to the negativity. The lens has changed for me even though nothing in our situation changed.  I could see something differently that I couldn't before. I didn't have to be afraid of future illnesses. I also didn't have to meditate on those traumatizing ICU images that tried to appear.

I was happy. Happy Jaycee was alive. Happy we all survived. Thankful that we made it through number 21. Encouraged to enjoy the days we are given.

I'm so happy God can help get us looking through the right lens to see the treasure in our lives!

What Mom Says!

As a parent, I find myself saying the same things over and over. (And over.)


When I'm parenting Jaycee, these are the things that come out of my mouth most often:

• Jaycee, it's time for your medicine/treatment.
• Let go of your brother please!
• Time to go to the potty.  Jaycee rarely goes to the bathroom on her own; she goes on a schedule.
• Don't eat so fast!/Chew your food.
• Are you listening to me?
• Shut off the Kindle./Who gave you the Kindle?
• I don't understand, use your talker.
• I don't know what Cousin Gabby is doing!  My response to her signing for cousin Gabby multiple times a day.
• Jaycee, dad left the room take his seat. This is a big joke in our family that Jaycee always sits in his seat when he leaves the room. Sometimes, I encourage it.
• I love you, Jaycee.  To which she replies as best as she can, "love you momma."
• You don't need your shoes, we aren't going anywhere.

As you can see, Jaycee requires instruction. Jaycee needs answers to her questions. Jaycee has to be reminded of things. Jaycee craves love. And, Jaycee likes to play jokes.

In this respect, she is like any other child.





 

Why I Cringe at the R-Word

The r-word is thrown around often in our society. I admit that even I freely used the r-word when I was younger. It took having Jaycee to understand why the r-word is so offensive. Jaycee became the face of the r-word for me. When I hear people say it, I instantly think of Jaycee.

Even though intellectual disability has replaced the term mental retardation, the r-word is still present in everyday speech. When I hear people say things like, "His hair is the r-word," it got me thinking about how people use the r-word loosely.

Based upon things I hear people say when they use the r-word, these are apparently descriptors of people like my daughter:
-Someone who has a bad hairdo.
-Someone who makes big mistakes.
-Someone who asks too many questions.
-Someone who messes up in games or are the losers in the games.
-Someone who looks ridiculous.
-Someone who doesn't make sense when explaining something.
-Someone who isn't smart.


I have never heard the r-word used in a positive way.

So let's give a name, a face, and a description of someone living with an intellectual disability.

This is Jaycee.
Yes, she has trouble speaking because of a combination of diagnoses despite years of speech therapy.
She cannot run fast and isn't very athletic because she has low tone and lung problems.
She is a slow learner, needs lots of repetition, and can work on the same task for months or years before catching on because of her intellectual disability.
Sometimes, she has trouble understanding directions to the point where 1 or both of us get frustrated.
Sometimes, her face gets messy when she eats. Her low tone makes it difficult for her to feel light food particles on her face.
Sometimes, she gets really, really scared and wets herself because she can't verbalize that fear to me.
Sometimes, her hair looks messy. The bi-pap mask she wears every night leaves her hair a complete mess by the morning.
But, Jaycee is toilet trained, dresses herself, buckles her own seat belt, reads simple sentences, uses a few hundred signs to communicate, and can navigate Netflix as good as I can.


I hope you understand why I cringe at the r-word.

Because she has an intellectual disability, she has to work harder for everything she does.

She's not a joke. Neither are her problems or the way she looks.

The use of the r-word is a cheap shot at people like Jaycee.

Can you see why the r-word makes me cringe?

What Special Olympics Did For This Mom

I can make you a list of special achievements that many children receive but Jaycee won't.

-School honor roll award: Nope
-Perfect attendance award: Not even close!
-Our school's Accelerated Reading Points Club: No-not sure if she even got 1 single point last year.
-Making a team that requires a try-out: I'm going to say no.

As proud parents post pictures on Facebook and rightfully receive accolades, I sit with my medically involved, developmental delayed, minimally verbal, foot brace wearing daughter. It's ok. She does what she can do. And we still find things to celebrate like going six months with no hospital admissions or when a letter in her name is written sort of legibly.

But then came Special Olympics and we had a new reason to celebrate.

Jaycee competed in Special Olympics for the first time last year. I enjoyed seeing her on a team, making the lap around the track for opening ceremonies, and seeing her compete. Jaycee's reaction of fear and crying when the gun shot at the start of her first race is something I'll never forget.

Even if she didn't win, it was a really neat for our family! Jaycee was an athlete. It was still nice to see her compete, get a ribbon, and have a new experience. Special Olympics gave her something she couldn't get anywhere else, especially in our rural area.

This year, Jaycee did well throwing the softball at the regional meet qualifying her for the state meet. We jumped at the opportunity to take her to the state competition.

I thought we would just go, watch Jaycee throw a softball for a few minutes, and make the long drive home. But, the state competition made me feel closer to Jaycee in a way I didn't expect.

I don't look like it now, but I was a runner in high school. I wasn't the best and greatest but I was average. I won a few races and qualified for the state track competition more than one time individually and on a relay team. When I went to the state competition, I knew I was going to lose. I wasn't running any times close to those extremely fast mile times. I knew and my parents knew we were pretty much going to the meet just for the experience of it all. Now, I was going to a state meet again this time as a parent.

Arriving at the state competition with Jaycee, one of the first things we did was get in the souvenir line. Jaycee picked out a pink shirt which we had her name and "track and field" printed on the back. Watching that shirt being printed, I was touched knowing my parents did that with me years ago. Here I was having a similar experience I thought I would never have with my child when I heard the words "Down syndrome" years ago.

The next day, we all put on our t-shirts supporting Jaycee and the Purple Miracles. I was a proud mom of an athlete. Anticipation grew as Jaycee was under the tent checked in and waiting for her turn. Jaycee waved at us and smiled. I found myself nervous for her. We positioned ourselves for the best viewing as she took the field. Jaycee threw as hard as she could. She did her best. And I was proud as she received her fourth place ribbon. She was proud too.

I was surprised at the emotions I felt seeing Jaycee compete and receive an award. I wanted to scream, "That's my daughter! She's awesome!" But I didn't. That would have been really weird. But, I did shed a few happy tears watching Jaycee succeed.

I felt a special connection to Jaycee that weekend. She was a state competitor just like her momma.

Special Author's Note:  I want to give credit where credit is due. Jaycee's teacher, Jennifer Tolley, initiated the Special Olympics program to our school just a couple of years ago. She took on added responsibilities when she volunteered to do this. Without Mrs. Tolley and her helpers, none of this would be possible for Jaycee and the other children on her team.



Jaycee with Mrs. Tolley and helper Amy Anselment

Where is God when...

Where is God when Jaycee is turning blue from respiratory distress?
Where is God when Jaycee had heart surgeries?
Where is God when my little girl is in pain?
Where is God when we are rushing to the emergency room?


These types of questions have popped in my mind often since having Jaycee. Sometimes, the question was a whisper. It was something I could ignore or easily refute. I knew God was with me.

Other times, the question was screaming in my head making me doubt everything I believed and understood about my Christianity. The question tainted how I saw the world. It made me see nothing good in my life because the problems were so huge. I stumbled around day to day going to church, reading my Bible, and asking for wisdom during trials with Jaycee with lots of doubt hanging over me.

Here's the one thing I have discovered.  When I doubt God's place in my life, I become completely hopeless....about everything.

And that's not a good spot to be in.

Be strong and let your heart take courage, All you who hope in the Lord. Psalms 31:24

I've blogged previously abut how I don't blame God for medical issues that happen in Jaycee's life. I think some things just happen,. While I don't play the blame game anymore, there are moments when I look around and try to find God during a crisis.

So, as I reflect back on Jaycee's 2 weeks and 5 days in the hospital, I will answer the questions:
 Where was God when all that craziness was happening? Where was God when Jaycee was in respiratory failure and on a ventilator? Where was God when her blood pressure was going too low? Where was God when Jaycee was crying in sadness in ICU? Where was God when I was feeling all alone and scared?

• When Jaycee's breathing was going downhill at 3 in the morning, I was alone in Jaycee's room praying. I felt alone in my stress and worry as I prayed that the ventilator they were threatening would not happen. I thought about calling my sick husband, who was a few blocks away in a hotel, but I didn't want to wake him up. I didn't want to wake anyone up with this news but I needed someone to talk to me. Then at 4:52 am, my phone vibrated. My friend from church, Amanda, sent me a scripture through a text message. I don't know if that's a normal time for her to send a message, but I'm assuming not. I was so happy to have someone awake I could reach out to about this situation, since at that point I was the only one aware of it! I needed that text at that hour. That was a moment from God.
• During my two hours of praying against the ventilator and reading scriptures, I pleaded with God that Jaycee would not need the ventilator. Then finally, a thought came, "What if the ventilator is what she needs? She might need it to get better." It wasn't the answer I was looking for but the thought was from God. It was preparation. She would be fine even if medically she went down a road I didn't want her to go down.
• A short time later, a text message from Amanda again that encouraged me to listen to God. "It's ok if He says yes" that she needs the ventilator. Confirmation of a thought that came to me earlier! And a God moment.
• When my husband and I were sitting in the parent lounge while the doctors were sedating Jaycee, putting in her feeding tube, and intubating her, I was nervous but calm. Then the doctor came out to tell us Jaycee's blood pressure was dropping and wanted permission to put in an arterial line. That was my breaking point. I cried. I let it all out and the words, "I can't do this again," came out of my mouth. I wanted to give up because I knew the days ahead would be really hard. My husband encouraged me. Then the Unspoken song "Good Fight" came to mind. The song stayed with me for days; it was God in the song. Here's some of the lyrics.

"Good Fight"

Until you stop breathing
Until you stop bleeding
Until your heart stops kick-drum beating
When it's hard times
When it's long days
And the enemy is right up in your face
When your back's against the ropes and you're feeling all alone

Keep fighting the good fight (Never give up, never give up)
Keep letting your light shine (Holding it high as long as you live)
'Cause I'm never gonna leave you
Always gonna see you through to the other side
Keep fighting the good fight, fighting the good, fighting the good fight, good fight

Even in the road blocks (yeah)
Even through the rough spots
When you're feeling you've given all that you've got
I'm with you in the next step
Giving you in the next breath
I'll be the voice saying "You're gonna make it"
When you're out there on your own
You are never alone

• Then a few days later, I was listening to the JOY FM Christian radio station on my short 8 mile drive to the hospital from our campsite. And what song should come on the radio? Yep, "Good Fight" came on. God was with me on that drive. It was a powerful moment that brought tears to my eyes.
• God was there when people messaged me prayers and scriptures at all hours of the day.
• When I got the phrase "God's got this" messaged to me from 3 different people, I knew it was a God thing after the second one. It's not a common phrase people message me. Amazing!
• When people reported to me they were awakened in the middle of the night to pray for Jaycee, it was proof God was in our situation.
• And of course, Jaycee getting better and getting discharged from the hospital was a God moment.

So there was God in our hospital admission.

He did not show up in a miraculous move healing Jaycee on the spot and saving us from all those heartaches and tears. That seems to be the thing people look for during a medical crisis: a huge, major victory.

If that is the only version of God you allow yourself to have, you will miss all the little, powerful, and meaningful God moments.

So, I know where God was in our situation. I have no doubt He was there.

Will you be willing to look for Him in your situation?

Jaycee getting therapy post ventilator while she was in the hospital